12 March 2012

Reading and writing hurdles

Allen is working on one of the A4 sheets that the speech therapist gave him last week. This is a particularly tricky exercise for him. Sample item:

Something you can cut that is not grass:_______________________

He holds up a pair of scissors and asks me "What's this called again?" I point out that the question is not asking for something you can cut 'with', but rather, somethat that can be cut. (And how grateful I am that we don't have to get through the spelling of 'scissors'!) We settle on 'paper' as a suitable answer.

This type of question is very difficult for Allen. His aphasia is now at the point where it's not only speaking and writing that he's having trouble with. Grammar and syntax are also harder and harder for him to process. The negative twist (e.g. 'not') in this series of questions requires him to make a grammatical leap that is especially challenging. In both oral or written language, Allen now does best with simple sentences in which the parts appear in a standard order (subject – verb – object). Complex and compound sentences, or sentences like the ones in this exercise which take a strange turn, are problematic for him.

Spelling, too, is proving more and more difficult – as well as writing, which has been a problem for a long time. Combine those two difficulties, and writing out a word like 'laundry' can take a long time, and several mistakes. By the time he is forming the 'd', he has forgotten what word he started out to spell – or that's how it seems. Once an excellent speller, Allen now regularly leaves out letters and makes other spelling mistakes – things he would never have done a few years ago.

Name something you drink that isn't milk:_______________________

I have no idea why Allen answered 'yogurt' to this question! Perhaps he was thinking of the smoothies I occasionally make with yoghurt. He managed to write answers to 16 of the 20 questions of this sort, but a few stumped him (e.g. "What is something hot that is not fire?" "Tell me something wood that isn't a table.") I don't know why. And the whole exercise took him well over an hour.

I'm not convinced that Allen enjoys these language exercises any more, even though he spends hours on things like this every day. And this has been going on, now, for almost three years. If there were other things he could do – such as woodwork or gardening - I think I'd suggest we throw away the pens and papers and books and just do other things that give him pleasure. But the fact is there is very little left that Allen can do to keep himself occupied. Once a first-class putterer and amateur carpenter, now he can't even bang in a nail or use a screwdriver even to just unscrew something. And he never really cared for gardening - though he was an able and willing gardener's assistant. But anything requiring strength, coordination or a steady hand is now beyond him. So working with pen and paper is about all that's left from his former life. It also happens to be that by which, I think, he has always defined himself – along with reading, and that, too, is proving a major challenge.

Large-print books reduce the amount of text Allen has to process in each line. But as with spelling, short-term memory loss is proving a real hindrance to his getting much pleasure from reading. Quite simply, he has to read so slowly that he forgets the main elements of a story by the time he goes on to the next page. Those texts that he can process are mainly the kinds of things given to primary school children. And even though he is willing to read such texts when working in the comprehension workbooks I buy from the educational supply warehouse, he doesn't really want to read about clowns, circuses and other childish topics when reading for pleasure.
Battles and Quests
Recently I stumbled upon a series of nonfiction texts by Anthony Horowitz, intended for upper primary students. Each of four books in this Legends series (Heroes and Villains, Battles and Quests, Beasts and Monsters, Death and the Underworld) features seven stories taken from mythology or fiction that are interesting enough to appeal to an adult reader. But the little books have just the right mix of type size, grammatical construction and amount of text per story to make them manageable for someone with A's problems. I found the first book in the local children's library, and promptly ordered the next three titles from Booktopia. Until now, we've relied on library books but Allen now wants to annotate his texts and underline various things. It seems to help him digest the content, so we're trying out his new method with these little books. So far they are holding his interest.

Allen's obviously determined to continue reading and writing, even as everything gets harder and harder for him, and more and more frustrating for us both. Can anyone suggest any titles that might appeal to a serious, mature adult whose technical reading age is probably no higher than 10 years?


Anonymous said...

I will comment further soon, but I wanted to say I love this post. We are r=ebeginning the speech school and starting reading tomorrow. Personally, I fear it, and dread it. It is so much homework and we have done none since Thursday. It is changing our entire schedule and life. We have not caught up yet!
I fear he will still not be able to read, but he is doing so well. And like Allen it is important to him.
A lovely post. And encouraging to us. Good luck with taking care of yourself during this process, also. C. gin

Chartreuse said...

Gin, I know what you mean by homework. We participated in two semesters of an aphasia clinic offered at a university in our capital city. Not only did we drive more than 1.5 hours each way to attend the 2-hour sessions, but the 'homework' ruled our lives for much of the week. We did produce some good and useful 'products' which Allen still uses, but we declined subsequent offers of a place at the clinic because we both decided the stress and disruption to both our lives was not worth the outcome. After all, we may have problems to deal with but we are both 'retired' and we want to take enjoy life as much as possible in spite of our difficulties.

Red said...

I admire the work you're doing with your husband. I can't help but think that these exercises would benefit seniors of all ages and conditions. My Dad had Parkinson's. As long s my step mom was living he had extra stimulation each day. Once he had to rely just on nursing home care he failed quickly.
For books I would suggest looking for junior fiction titles. Book stores should have areas that are classified as junior fiction. Have you thought about graphic novels?

Chartreuse said...

I quite agree that these mental exercises would be good for anyone. Also, at our recent annual check-up with the geriatician who keeps tabs on Allen's brain, he expressed surprise that anyone diagnosed with progressive aphasia six years ago could continue to function as well as Allen does. "A veritable poster boy", was his assessment. And yes, junior fiction is the category I now look for. But I've had no contact with graphic novels. What are they?

J.R. said...


Wow, this post brought back a lot of memories. Don never was able to use the written word or spell but he sure worked as hard at speech homework as your husband is doing. It took him two years to re-learn to read and a few more years before he advanced to adult level reading. Fast forward to the ten year post-stroke benchmark he read the nightly newspaper cover to cover and got great enjoyment out of doing so.

In the beginning we had a problem with using children's books, too. So his speech therapist had him concentrate on just reading headlines in newspapers and magazines as an alternative to children's books. That worked for Don. Their type was bigger (and easier to process, I guess) and the sentences in headlines are cut down to the basics without being childish.

I know how your life is ruled by Allen's language disorders. Sending virtual hugs your way.

Jean from the Planet Aphasia, etc.

Chartreuse said...

Good suggestion, J.R., re the newspaper headlines. Allen still looks at parts of the newspaper, but doesn't read (or rarely reads) whole stories. I must get him to read some headlines aloud. He'll enjoy that, I'm sure.

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.